Can People Really Grow Out Of Autism?

Let’s start with the headlines blaring the news about a recent autism study. They almost invariably use the phrase “grow out of autism,” even though the study itself does not use that phrase or even reference “grow” except to talk about head circumference. Instead, the authors of the report, published in The Journal of Child Psychology and Psychiatry, use the term “optimal outcomes” to describe what they detected in a group of 34 people who were diagnosed as autistic when they were under age 5.

As the study authors themselves state, this idea that autistic people might show reduced deficits to the point of losing a diagnosis is not new. In fact, first author Deborah Fein and colleagues cite studies identifying frequencies of “optimal outcomes” as high as 37% among autistic people. The lingering open questions relate to whether or not the autistic people in these studies had received the correct diagnosis in the first place. The only “novelty” of these latest results appears to be confirmation that indeed, the 34 people they identified as having an “optimal outcome” did receive an accurate diagnosis of autism in childhood. In other words, they are confirmed to have had a developmental disorder, a neurobiological condition called autism — yet, they “grew out of it.”

The rest? Nothing new. The people who show these optimal outcomes tend to have started out with, as the authors describe it, “higher cognitive functioning and somewhat milder initial symptoms.” Many of them had behavioral interventions in childhood. The researchers point out that the perception that everything’s all hunky-dory for the 34 people they evaluated does not rule out their having “residual difficulties” with various aspects of autism, including executive function–think project management–or language or social interaction.

For each participant, whose ages ranged from 8 to almost 22 years, the researchers interviewed the parents. One of the required parental answers for a participant to be considered for the optimal outcome category? The parent had to report that their child/adult child “had typically developing friends.” That question seems to imply a certain low expectation for autistic people, many of whom I know have “typically developing friends” despite themselves still being autistic. It certainly suggests that for people who continue to meet the criteria for an autism diagnosis, any pursuit of a friend of the “typical” sort would be futile.

How did those 34 “optimal outcome” participants do on the various measures of “are you autistic or not”? Well, seven of them–that’s >20% of the group–turned out to have “some impairment” in nonverbal social interaction. For reasons that are unclear, the researchers decided that these impairments were not the result of “an autistic quality” but of “inhibition, anxiety, depression, inattention and impulsivity, embarrassment, or hostility.” Of course, each of those themselves could be secondary to autism. Even though this 20% showed impairment, they were retained as being “optimal outcome” folk, those who, as the news media report might say, “grew out of” autism.

To determine whether or not these autistic people were still autistic, the research team administered a battery of tests; they list eight in their paper. Of these eight, three were parent completed. One consisted of clinician observation and scoring. One was an IQ test. One was a handedeness test (left-handedness is more common among autistic people), and the remaining two evaluated facial recognition and language. ETA: None of them examined if the participants retained any of the positive aspects of being autistic–refined sensory detection, detail orientation, pattern finding, etc.

Let’s go back to those news media stories. In one interview, lead author Fein commented that “these people did not just grow out of their autism.” She then goes on to credit the hard work of the parents and therapists of “these people” for any improvements, but I’d suggest that “these people” also did a lot of hard work–and probably still are doing so. The thing is, no one seems to have asked “these people” about that.

Among the many articles covering this study, I couldn’t find a single one featuring an autistic person commenting about the report. As you can see from how the researchers evaluated their 34 “optimal outcomers,” they don’t appear to have asked said optimals about how their internal function jibes with the external results or what they do to achieve those results. Because no one else seems to have bothered to ask autistic people these questions, I did. I polled the autistic community via social media, asking autistic adults what’s going on inside them when they appear outwardly typical and asking any readers if they felt they’d “grown out of” autism.

Their response was immediate and intense. “I don’t ‘look’ like I have it, but I do,” responded one autistic woman, who went on to describe how she’s learned over time about different expectations for behavior and tried to apply those. Others describe using pattern recognition to navigate socially, while still others report having an “optimal outcome”-like period in later childhood but then experiencing a trough of struggles in early adulthood as new responsibilities and expectations arose. They wrote to me about self-monitoring, about working hard to compensate in social situations but then experiencing crashing exhaustion afterward. They talked about self-selecting their social groups as adults as a way of feeling more socially at ease. The concepts that came up again and again and again were “compensating” and “coping.”

It’s not a huge surprise that autistic people with average or above-average cognitive abilities might be able to intellectualize social rules and algorithms and put them convincingly into practice. Does that ability mean that they aren’t really autistic? The real crux to answering that is this: Do we view autism only as a clinical diagnosis based solely on behavior and outward function, or do we talk about it as a neurobiological construct and identification, with an understanding of the context of the hidden disability and the hard work that those outward behaviors require?

Many conditions that we measure either directly with lab tests or behaviorally can lie under a mask of apparent normalcy or typicality. A woman with diabetes who maintains her blood sugar at a healthy level through diet and medication still has diabetes. A person with obsessive-compulsive disorder who fights successfully every second of every day against caving to obsession or compulsion still has the disorder. Anyone who has ever put on a public face when all they wanted to do was stay in bed should understand something about doing the internal hard work of compensating for a disability without showing outward manifestations of it.

Does that capacity mean, in the parlance of the news media reports or an editorial accompanying the paper, that the up to 25% of autistic people who can do this are “recovered” and no longer autistic? Or does it mean, rather, that they’ve become increasingly adept at meeting the interaction standards of the social majority?

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This is wonderfully reported and presented. As the mother of a high functioning Aspie I am told quite often that he WILL “grow out of it,” and while our hope is that his social challenges will fade away with maturity, hard work, and time, we pray that his strengths only increase.

Our charity, Treating Autism, has close to a thousand member families. Many of them have seen incredible changes in their children with ASD diagnoses when using appropriate interventions. Some of these children have completely recovered, and no one, regardless of their expertise in autism, would see any traces of their former diagnoses. This type of recovery is still fairly rare, although in a survey conducted of our members, some of whom are adults with ASD treating themselves, 95% of respondents said that interventions had proven beneficial, and 24% responded that biomedical treatments had been ‘life-changing’. We know that the sort of ‘optimal outcomes’ discussed in Fein’s research would be a lot more common if people with autism and their families were given the sorts of support–medical and otherwise–that they need, and if professionals were basing their actions on the fact that ASD is not necessarily a life-long diagnosis. Sadly, the vast majority of these families receive little to no appropriate help. We hope, for the sake of our children, many of whom are now adults, that this study and other current research will be taken seriously by the professionals who, by perpetuating the erroneous belief autism is by definition a lifelong disorder, do a disservice to those who might benefit from interventions aimed at addressing core symptoms of autism.

I have seen incredible changes through my life too. it’s called “being Autistic and maturing”. Frankly I don’t think your figures are reliable or relevant. Frankly I believe you are just like any other group peddling false hope to parents and turning them away from the real conclusion that every successful Autistic started in the same position as most Autistics.

Hell, Temple Grandin early in her life was as taxing as any difficult Autistic you’ve ever known.

I like how you claim people are doing a disservice to us when cure-pushers like you ignore what we think of ourselves all the time. All these groups like Autism Speaks care about is money and their cult of hating Autism.

I suggest that some do in fact outgrow or overcome the symptoms of autism over time. This, based upon my own research, is most likely due to dietary changes as children become independent and prepare their own foods. Changes in the diets of the 34 individuals would likely enhance this type of study if included. There are several critical brain nutrients lacking in those with autism and when provided in the diet, many symptoms soon disappear within a few days to a few weeks. This has been true for the milder forms. The more severe forms are helped but the symptoms do not disappear totally.

Emily I read this study and was impressed that development of autists is being examined sans the biomed nonsense. However, upon reading your commentary I have to say you compelled me to look at this with a different lens. I really appreciate your take on this and making me see this less from neurotypical, sciency goggles.

We believe that research used to solve mitochondrial related diseases will have an impact on the diseases, such as Autism, Alzheimer’s, Parkinson’s, and more. Autism, much like mitochondrial disease has varying levels of symptoms, but there is relation to the mitochondria and these other diseases. We’re trying to fuel connections and fund cures, that will not only effect mitochondrial disease, but other related diseases. If you’re interested in more information check out: http://mitochondrialdiseases.org/autism.php

It disturbes me that imparement must be shown to make a diagnosis. If one accepts the notion that someone without social imparement can be autistic, then our understanding of autism, which excludes these people from consideration, is very poor indeed. It’s sad because they are probably the most verbally capable of describing their experience. Wouldn’t we learn more from researching autistic adults who can answer questions intelligently than only children?

It seems like the moment an autistic has been “cured”, they cannot be asked about their experience. They don’t have it. Never did. So the message I get is “act normal”; that’s the sole determinant of your neurotype.

We call it a spectrum, but sometimes it seems to get treated like a binary “yes” or “no”. If it is truely a spectrum, shouldn’t neurotypical be somewhere on it? And “autistic” should be relative to it.

This one-dimensional thinking tires me. It doesn’t feel like anyone genuinely wants to understand autistics. Fewer seem to think they could be productive members of society.

Yeah, I have an Aspergers mother. She was probably pretty clearly disordered as a child. The usual-no interest in her siblings or kids her age and her first words were elaborate names for colors-not just red and blue but shades of blue. Got trains?

grew out –meaning fewer symptoms over age or time. Those with Autism who have fewer symptoms over time haven’t worked harder than those without autism to begin with or those with autism who continue to have extremely disordered symptoms.

Didn’t mean to be emphatic. Just saying that it appears clear that there are adult’s with aspergers that were probably more disordered as younger people. My aunt’s description of my mother suggests that she had symptoms that today would clearly be considered “on the spectrum”, such as no interest in her own siblings and, as an adult she shows tons more interest in the welfare of her bulbs than that of her grandchildren. But, there is no evidence that “working hard” on symptom reduction is more effective than not, and it would be hard to classify or judge the extent to which someone is “working hard”. Most Aspies don’t see anything wrong with themselves-nor do most people diagnosed as having autism but ask those who have been impacted by them-family members, neighbors, etc. . It is clear that, with or without treatment, many of the adults with a constellation of Aspie-like symptoms were more clearly or obviously disordered as younger people but most are not diagnosed and never had treatment. As they got older they found a niche or they learned to mimic more neuro-typical behavior or they surround themselves with others that either accept or are interested in their latest obsessions. It is much more common to see websites for grandparents of children with autism then it is to see sites for offspring of adults with autism for that reason.

Emphatically? Perhaps that last line was overly charged, but I don’t believe it’s a spectrum, and I don’t believe that if I can overcome my social deficits that I will not be autistic. It doesn’t make sense. How will that change my neurotype? Or will I prove that I’m a neurotypical faking it? Will my sensory and repetitive behaviour issues go away, too?

This demonstrates to me a huge obstical in our scientific understanding of autism. Though, I also don’t believe all autistics have the same condition. And conditions that don’t qualify as autism might not get treated.

Something just seems very wrong with this picture. It’s inconsistent and controdictory. If you have social problems, then your repeatitive behaviour and sensory issues are autism. If you don’t have social problems, you’re just eccentric. One minute it’s autism, the next it’s not. I just don’t think we know what we’re looking at.